Brave New Genetic WorldSTACY MATTINGLY
Even human embryonic stem-cell research, the most morally problematic to date of all the new reproductive technologies, has a huge cadre of advocates who look to stem-cell therapy to cure a wide range of degenerative disabilities. That is where the brave new genetic world we have built on IVF technology starts to look scary.
It all started in 1978. Louise Brown, the world's first baby conceived in a scientific laboratory, was born that year to her thrilled, otherwise infertile parents in Oldham, England. She was the offspring, so to speak, of ten-plus painstaking years of similar attempts by a Cambridge University scientist named Robert Edwards, who sought to bring about the conception of a human being outside its mother's womb, and then to implant the embryo safely inside its mother.
That very same year, a physician-couple, Howard W. Jones Jr. and Georgeanna Seegar Jones, retired from their faculty positions in obstetrics and gynecology at Johns Hopkins University and set up the Jones Institute, America's first in vitro fertilization (IVF) clinic, at the Eastern Virginia Medical School in Norfolk, Virginia. The Joneses had worked with Edwards at Johns Hopkins.
A reporter for the Norfolk Ledger-Star asked the pair a question when they first arrived at the venerable Navy town on the Chesapeake Bay: Could they pull off in Virginia what Edwards had pulled off in England? Their answer was as simple as it was optimistic: Yes, with money. An anonymous donation to the clinic followed, and less than two years later, Elizabeth Carr became the first in vitro, or "test-tube," baby to be born in the United States.
It is amazing how quickly today's burgeoning human genetics industry surrogate motherhood, egg donation and harvesting, cloning, the creation of designer children, and the highly controversial branch of stem-cell research that depends on the use of human embryos for experimental purposes has mushroomed from the relatively crude fertilization technology that led to Louise Brown's birth just 23 years ago. Once scientists figured out how to make human life in a laboratory, the possibilities for tinkering with it became seemingly infinite.
The United States has been a leader in this fast-paced research, a sort of "keeping up with the Joneses" on an international scale. In America alone, more than two million couples a year seek infertility treatments, which almost inevitably include egg-harvesting, from more than 300 Jones-like clinics across the country, some freestanding and essentially for profit; others, like Jones, affiliated with university medical schools.
Until the Department of Health and Human Services (HHS) permitted federal funding for human embryonic stem-cell research under the Clinton administration last year, the industry has never been subsidized by the federal government in a significant way. It operates mostly from a base of private donations and client fees (anywhere from $20,000 to $50,000) whose aggregate size is essentially unknown but clearly huge.
In fact, IVF technology retrieving eggs from a woman's uterus, fertilizing them in the lab, and then reinserting some with the hope that at least one will implant seems to have become a springboard in the development of other reproductive technologies that, taken together, have brought humanity to the brink of what we now call the "biotech revolution." We are entering an era in which increasingly we will be able to remake our own bodies, heal ourselves genetically, and perhaps change the evolution of our species.
Today's headline-making medical developments such as cloning, human embryonic stem-cell research, genetic screening for disease, and genetic engineering all depend in some measure on aspects of IVF, which was a cutting-edge procedure when Brown was born. Now it's something that scientists not to mention the millions of would-be parents who visit infertility clinics take for granted.
Even human embryonic stem-cell research, the most morally problematic to date of all the new reproductive technologies because it involves the destruction of the embryos, has a huge cadre of advocates who look to stem-cell therapy to cure a wide range of degenerative disabilities, including Parkinson's and Alzheimer's diseases, diabetes, cancer, and stroke. That means that everyone threatened with such disabilities or who has a relative suffering from one of them is now potentially part of a vast constituency for pushing the research forward. That is where the brave new genetic world we have built on IVF technology starts to look scary.
"In America, scientific research is approached in the same spirit as going to the moon or building a railroad across the country," observes National Institutes of Health (NIH) neuroscientist Ron McKay. "It's part of the national identity, and it's true for all Americans, including those who take strong positions on the ethical issues. You don't have pioneers on one side and ethicists on the other. It's all in all of us."
The moral implications of these ballooning genetic developments have not been lost on the Catholic Church. In 1984, the Pontifical Academy of Sciences asked the Joneses to visit the Vatican to help it develop a position paper on IVF technology. The Church used that paper to produce Donum Vitae ("The Gift of Life"), its 1987 document on human embryonic and reproductive science. Donum Vitae did not adopt the Joneses' optimistic stance on IVF, concluding that it was a morally illicit technology. Even when used with the best of intentions helping infertile women to conceive it almost always results in the destruction of embryos, and it removes procreation from the conjugal embrace to the scientist's laboratory, the Vatican argued. The Joneses considered their trip to Rome to have been a failure. Meanwhile, IVF-derived research and related scientific breakthroughs continued apace.
All the new technologies are linked to each other by more than their IVF base. We're now closer than ever to the prospect of genetically engineering our offspring, thanks to the human genome, a map of all the genes in the human body that was published only this year. An understanding of human stem-cell behavior derived from ongoing research on embryonic and adult cells may yield even deeper insights into the relationship between the genes in the genome. And if recent developments in Great Britain, which now allows scientists to create and destroy embryos in their laboratories, signify the wave of the future, stem-cell research will be building on cloning research to develop new therapies for degenerative diseases.
MAKING FITTER PEOPLE
The biomedical frontier seems to extend outward daily. National Genome Research Institute director Francis Collins has asserted that a "fitter" human species via disease immunity will be the eventual consequence of mapping the human genome. Earlier this year, University of Kentucky scientist Panayiotis Zavos went further and announced that he and a private consortium of scientists intend to clone a human embryo and bring it to term. In 1998, physicist Richard Seed, commenting on the 1997 creation of the first cloned mammal, Dolly the sheep, announced his intention to set up a cloning clinic. He predicted the manufacture of as many as 200,000 human clones in the near future, as mass production meets cloning technology.
Different nations have reacted to the prospect of subsidizing these developments in different ways. America, for example, provides no significant federal funding for IVF. And under current HHS policy, America allows stem-cell researchers receiving public money to have access only to cell lines from "spare" human embryos left over from IVF-generated fertility procedures. Britain's new policy, by contrast, allows scientists receiving government funds actually to create human embryos in the laboratory for research purposes.
Right now, most Americans don't seem to have thought much about the ethical implications of the new genetic technology. "The fundamental problem is that Americans have ceded their responsibilities to make these decisions to scientists," says William Saunders, senior fellow for life issues at the Family Research Council in Washington, D.C. "Some of these things are very complicated, and Americans have confused the technical ability to do them with the right to say whether it should or shouldn't be done. But America needs to wake up. This is not something for scientists."
One problem is that, thanks to huge amounts of government and private spending on medical research, biotechnological progress is amazingly fast. Take stem-cell research. Stem cells are "master cells" found in large quantities in days-old embryos, and also in adult tissue, that if properly coaxed, can become any kind of tissue in the body. Human embryonic stem cells were first isolated only in 1998 by scientists at Johns Hopkins and the University of Wisconsin. Embryonic research was at the time hampered by a 1996 HHS rule that generally barred public funding for research on human embryonic tissue. Adult stem-cell work took off with public funding in promising directions. Nonetheless, many scientists lobbied vocally to change the HHS rule, deeming embryonic stem cells preferable to adult ones, as they are thought to be longer-living and more malleable. And last year, the HHS reinterpreted its regulation to accommodate the embryonic research. Since stem cells have the potential to rejuvenate tissues damaged by diseases such as Alzheimer's and cancer, "technically, this stuff matters," the NIH's McKay insists. "It really matters to people who are sick."
ARE EMBRYOS HUMAN?
Enter ethics. Human embryonic stem-cell research always entails the killing of very young embryos what some scientists prefer to call "pre-embryos." In the typical research procedure, the stem cells are extracted from a days-old IVF-created embryo before the master cells have had time to turn into more specifically differentiated types of cells. The rest of the embryo is then thrown out. Both sides of the ethics debate over this technology claim the same flag: Both say they are pushing what they call a life agenda. Advocates of human embryonic stem-cell research argue that, by working to cure people, they are essentially pro-life. Opponents focus on the killing of the embryo, which they argue is the taking of a human life.
Kevin Fitzgerald, S.J., a scientist and bioethicist at Loyola University in Chicago, sums up the battle as essentially a debate over who counts more, the living or the unborn. "In essence, those who support the research argue, 'How can you tell the diseased they can't have this research just because of these others, embryos, who don't count as much?' It's all about who counts."
The opponents of embryonic stem-cell research contend that it is never permissible to take a life, even an embryonic life, to cure a disease. And in so doing they use language that reminds many people of the abortion debate, which means they just stop listening. "You can't talk about anything that sounds like abortion or you're dismissed as the far right giving irrational arguments," says Dianne Irving, a Catholic medical ethicist, former NIH scientist, and opponent of embryonic stem-cell research. "There's a tremendous backlash."
In fact, says Irving, who has testified before Congress on cloning and human embryo research, it is impossible to get away from the centerpiece of abortion in any conversation pertaining to ethics and the biotech revolution. As with abortion, the debate revolves around the definition of a human being. According to Irving, who has also taught philosophy at Georgetown University, the problem arises from what she refers to as a fundamental mind-body split, ushered into the philosophical arena by René Descartes in the 17th century. By not deeming human embryos as really human, says Irving, people can rationalize their destruction. "It is textbook Biology 101 that the physical dimension of every human being begins at fertilization," she says. "What's going on today is an effort to depersonalize the embryo and/or fetus in order to ethically justify this research."
For example, in January, Britain became the first nation to approve the use of cloning technology to create human embryos for research purposes. Called "therapeutic cloning," this technology is considered beneficial for the development of cell therapies, as patients would be less likely to reject tissues made from their own clones than from the cells of strangers. Therapeutic cloning requires that the resulting embryos be destroyed after the cells are removed. In the scientific lexicon, it is different from "reproductive cloning," which entails bringing the cloned embryo to live birth. Irving says the distinction makes no sense. "Either they say there's no human being in therapeutic cloning, or there's a human being but no human person. It seems that until the embryo is implanted in a womb, it's a free-for-all."
Proponents of embryonic stem-cell research counter that defining what is human is not so cut-and-dried. "We are always making determinations about human life," says Ronald M. Green, director of the Ethics Institute at Dartmouth College and author of a forthcoming book, The Human Embryo Research Debates. "But the question is not who counts. It's what counts. To use the word 'who' pre-answers the question. It concludes that the early human embryo is an individual."
Green argues that the pro-life camp is using outdated science: "When scientists first looked through the microscope, saw the sperm and egg fusing, and noticed dramatic changes, they concluded this was the decisive event, the so-called moment of conception." Now, he says, science knows a great deal more about the details of the fusion, making it more challenging to determine when exactly conception should be deemed to have occurred.
For example, when a human spermatozoon makes contact with an egg, it initiates major biochemical changes and then locks out other sperm perhaps a fair definition of conception. But it takes many hours for the two 23-chromosome strands of genetic material in the new zygote, one from each parent, to line up and form a new genome, and some contend that this later moment constitutes the true beginning of the embryo. Furthermore, even after the new multicelled entity, now called a blastocyst, implants in a woman's uterus, there is still some chance that it may split, forming identical twins. Perhaps the blastocyst shouldn't be considered an embryo until the possibility for twinning has passed, Green and others argue.
The Catholic Church, however, focuses on the fact that a human life is at stake from the beginning.
"Some people's conclusion may be that because determining the moment of conception or the beginning of life seems to be complicated, we should go forward with [embryo] research," says David Byers, executive director for science and human values at the National Conference of Catholic Bishops (NCCB). "The Catholic Church's conclusion is that because these things are more complicated, we should invoke the precautionary principle and go the safest route. If you can't prove the embryo is not human, let's not destroy it." Last August, Pope John Paul II told 5,000 scientists that research involving "the manipulation and destruction of human embryos" was morally untenable.
Whatever the moral concerns, human embryonic stem-cell research can be undertaken in the American private sector, which has clearly been willing to richly fund such research in the past. A 1996 rider to an HHS appropriations bill bans federal funding for the creation of human embryos for research purposes, as well as all research "in which a human embryo [is] destroyed, discarded, or knowingly subjected to risk of injury greater than that allowed for research on fetuses in utero."
But after human embryonic stem cells were isolated in 1998, the NIH (which is a branch of HHS) started a rule-making process last year that, in spite of the ban, enabled scientists to obtain federal funding for embryonic stem-cell research. The NIH's general counsel offered a new interpretation of the rider, contending that it would be legal for the government to fund research on stem cells obtained from frozen embryos left over from IVF procedures, as long as the money wasn't used for the actual extraction of the cells or the destruction of the embryos.
Opponents called the NIH move a case of legal acrobatics that patently violated the HHS rider. However, a phalanx of patients' rights groups lined up under the banners of actors Christopher Reeve and Michael J. Fox, who both suffer from severe disabilities that stem-cell research might alleviate. Both urged Congress to allow science to proceed.
Baby boomers, who are now approaching retirement age, which for most will mean health problems, are another powerful interest group with a stake in embryonic stem-cell research. Daniel Perry, who heads the Patients' Coalition for Urgent Research (CURe), argues that stem-cell research may alter the way American society currently views the elderly as a burden. "We can keep people healthier longer, happier, able to pursue their goals free of the impact of disease," says Perry.
Irving, the Catholic ethicist, dismisses this line of thinking as crudely utilitarian. "The utilitarian aspect is that the dignity of the individual human being at these early, pre-born developmental stages must give way to the dignity of the community, or the state, or the globe, or the cosmos. That considers only the end or goal and completely disregards whether the means used to get there are ethical."
Advocates of human embryonic stem-cell research counter that surplus embryos are an inevitable byproduct of IVF so why not put them to good use? "Until the utopian day when it takes one embryo for a pregnancy to occur [using IVF technology], there will be surplus embryos," says Dartmouth's Green. "The embryos will be thawed, incinerated, and dissolved. Is it permissible on the way there to extract the inner cell mass in that process and to provide it at cost to government-qualified researchers?"
But with countries like Britain approving the creation of embryos specifically for research purposes, Green's and the NIH's justifications for using spare embryos may soon be moot. Richard Doerflinger, associate policy director at the NCCB's Secretariat for Pro-Life Activities, says, "The British have concluded the NIH approach to be ultimately useless. In their view, using spare embryos amounts to an interim step, as it doesn't guarantee the matching of tissue for patients needing cell therapy. This conclusion sends a message that if people support human embryonic stem-cell research today, they will be called on tomorrow to support cloning and the creation of embryos for research. The reality of that slippery slope must be part of the debate."
At present, there is no U.S. law banning human cloning. After Dolly made her debut in 1997, President Bill Clinton issued a memorandum indicating an unwillingness to use public money for human cloning, and many scientific organizations followed suit with their own moratoria. But scientists in the private sector were free to proceed with human cloning research if they wished, and some are doing just that.
A CHEAPENING OF LIFE?
"The traditional pro-life side of the human embryonic stem-cell debate sees [the genetic revolution] as a fulfillment of the warning pro-lifers have been making for decades: that unrestricted IVF leads to the cheapening of life by creating life outside the body," says Perry of CURe. "Maybe their aim is to bring about the regulation of IVF clinics. I can understand why they're upset over this procedure, but it's been a boon for thousands of childless couples and has great public support."
Nonetheless, the Church has always opposed IVF on the precise ground that it cheapens life. As long ago as the 1950s, when artificial insemination was on the rise, Pope Pius XII expressed concerns about the creation of human life in the laboratory. Doerflinger says, "The Church's position is that IVF is too dehumanizing a way to create a human being. It tempts people to see embryos as mere products subject to quality control and manipulation."
Technically speaking, human embryonic stem-cell research in America is not currently being held hostage by anyone. Congress has not readdressed its 1996 funding ban, and the NIH will be reviewing embryonic stem-cell grant applications this spring. With a new president, George W. Bush, who has indicated that he prefers pursuing adult stem-cell rather than embryonic research, and that he opposes research on tissue derived from aborted fetuses, the agency's policy may quickly change. One staffer on Capitol Hill says that Bush will likely soon rescind the NIH guidelines by executive order. But other reports indicate that the president may proceed more cautiously. The National Bioethics Advisory Commission, created by an executive order of Clinton's, is scheduled to dissolve this year, and some are urging that it should be set up as a permanent board which would give the government a broader role in setting the tone of public debate on stem-cell and other bioethics issues.
One thing is clear, however: There will be continuing pressure from the scientific and health establishments to push the frontiers of human genetic research forward, no matter how bizarre or destructive the consequences. When IVF techniques became routine two decades ago, over the objections of the Catholic Church, it became nearly impossible to effectively challenge the development of a myriad of new and perhaps more objectionable technologies from human cloning to the manufacture of custom-built children that are based on IVF.
"When you consider where genetics research is headed, it's just like anything else," says the NCCB's Byers. "The human race gets new skills, whether it be picking up a hand ax or mapping the human genome. The question is, what will we do with it? Take dividing the atom, for example. That had some good results. A large percentage of France's electricity is nuclear-generated, and many of our space probes are powered by thermonuclear reactors. That's on the positive side. On the other side, we have intercontinental ballistic missiles. If atomic science is the great example of the 20th century, genetics will likely be the great example of the 21st century. It gives humanity enormous power. How will we use it?"
Stacy Mattingly. "Brave New Genetic World." Crisis 19, no. 1 (April 2001).
This article is reprinted with permission from the Morley Institute a non-profit education organization. To subscribe to Crisis magazine call 1-800-852-9962.
Stacy Mattingly is a contributing editor of Crisis.
Copyright © 2001 Crisis
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